'One Big Step' fundraising plea for cerebral palsy boy's operation

Catherine Pretty and her children Daniel and Dexter. The family are raising money for Daniel for an operation in America

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A family from Guildford is attempting to raise £55,000 so that their six-year-old disabled son can have surgery that could change his life.

Simon and Catherine Pretty, both 39, have started a campaign called

in order for their son to have an operation in Missouri in the USA.

Daniel was born prematurely in September 2007 and was conceived as a pair of twins, but his brother died in the womb at 19 weeks.

Daniel was delivered after 30 weeks, weighing 3lbs 7oz, and was taken to the Special Care Baby Unit at the Royal Surrey County Hospital in Guildford, where he spent six weeks.

It was after a routine scan that Daniel was diagnosed with brain damage, which resulted in spastic cerebral palsy.

Mrs Pretty said that as a result of Daniel’s condition it is as if he is tensing his muscles constantly. This means he cannot stand or walk unaided, and therefore relies on a walking frame or his wheelchair.

“Physically he is quite limited and according to the doctors it will get worse as he gets heavier and bigger, and he will become more dependant on his wheelchair,” Mrs Pretty said.

Mr and Mrs Pretty are hoping they can raise enough money for Daniel to have a spinal operation called selective dorsal rhizotomy, which he has been accepted for in the USA, next spring.

Later this year the family will have a consultation with Great Ormond Street Hospital to see if Daniel can have the operation in the UK, but because of the severity of his condition the chances of success are less likely and they fear he may not be accepted.

Mr Pretty said because the operations have been carried out in the USA for a lot longer than the UK, health experts are more willing to take on children at the more severe end of the condition.

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However, if Daniel can go through with it in the UK, they will need to apply for funding through the NHS for the operation, which again is not guaranteed. In a situation where Daniel receives the funding, Mr Pretty said he would still need money to pay for his aftercare and physiotherapy, and said that with any surplus money raised, they would look to donate it to families in a similar situation.

The procedure, which lasts around four hours, involves the surgeons testing nerves in the spine to see which are contributing to the spasticity and which are carrying a more normal signal.

The nerves that contribute most to his condition will then be cut.

“Immediately afterwards he will be as weak as a baby,” Mrs Pretty said. “There will be months of intense physiotherapy afterwards. He will have to learn to walk from scratch, but he has the potential to walk independently, which will be brilliant.”

He has had botox injections into his legs, which have helped to reduce the spasticity, but only temporarily. The only attempt at permanent solution to reduce the effects of his condition is surgery.

Daniel who turned six on Friday (September 6) and started his first year of school at St Thomas of Canterbury last week, has a younger brother Dexter who is two.

Mrs Pretty is hoping that as well as being able to walk without a wheelchair or walking frame, that Daniel can have independence and freedom and be able to play with his brother.

She also wants families in her position to know more about the operation.

“To know there are children like Daniel who are bright and articulate children, whose legs just don’t work, is an important thing,” Mrs Pretty said.

“There is something out there. It can be helped.”

The Prettys have so far raised about £13,000 and they are encouraging people to do whatever they can to help raise the funds.

A black tie fundraiser will be held at the Radisson Blu Edwardian Hotel for the cause in Guildford on November 7 from 7.30pm.